Why We Don't and Why We Should

Reasons why we, the parents of children with low-functioning autism, don't write or talk as often as we might about how tough our lives can be....

Because we don't want to hurt those who share the "autism" part of the diagnosis but not the "low-functioning" part.

Because we know it's natural for people to only have a limited capacity to hear about how hard things can be before they get tired of hearing it.

Because we are too tired to talk about anything.

Because we know it's more politically correct to emphasize the positive.

Because sometimes we are so used to it that it doesn't seem newsworthy.

Because the other people living this life already know how it is, and we think people not living the life generally will never quite get it anyway.

Because we think if we don't put the worst of it into words, it won't quite be as true.

Because we have been taught there is no point in complaining about things that can't be changed.

Because we don't want to hear about "solutions" that don't exist or don't work.

Because we are tired of hearing about all that Temple Grandin's mother did.

Because we feel secretly like we should be doing a better job, and if we were, it wouldn't be so hard.

Because we love our kids so much that it's hard to believe, and admitting how hard our lives are with those same kids feels wrong.

Reasons why we should break the silence and talk and write and shout about it...

Because otherwise, the world assumes autism means Temple Grandin and math geniuses and slightly quirky girls who don't get diagnosed until high school because it's so hard to tell they are actually autistic.

Because maybe, just maybe, if people knew the truth, they would want some of their tax dollars to go toward helping us.

Because when our kids melt down in public, it would help if people didn't assume we were bad parents or they were bad kids.

Because most people could handle the truth.

Because our kids deserve to be written about, to be seen, to be known, as much as all the other kids on earth.

Because of books like the one I read about girls with autism with the line I will never forget "Girls with autism have a very bright future", and the chapter of advice about when our girls get to college.

Because not talking about something means it's an unspeakable tragedy, and our kids' lives are not an unspeakable tragedy.

Because the school system needs to figure out what to do with kids who have had many years of academics and have not learned anything academic.

Because we love our kids so much that we can tell the truth about how our lives truly are in a way that still lets that love shine through.

Because try as we might not to, someday we parents are going to die, and that is the scariest part of all, and it might be less scary if society actually knew our kids, our kids who will someday be adults and will need help that does not yet exist.

The kind of autism that isn't talked about

As a lot of you might already have done, I read this essay recently.  If you haven't, you might want to read it.  (Link here)

I don't agree with everything said in the essay.  I don't agree that more awareness necessarily would result in less isolation and less lawsuits.  I don't quite agree with how depressing a picture is painted in terms of the numbers of non-talked about kids with autism.  But those are little things.  In general, I agree very much with what is said here, and I applaud the author, Bonnie Zampino, for having the courage to say it.

And I ask myself, why?  Why is there so little awareness or discussion about the type of autism this author's son has, and my daughter Janey has, and so many of the people who read this blog have children with?

I can think of a few reasons.  One is that most parents don't like to present their kids in less than flattering lights.  I'd far rather write a post about some step forward Janey has taken than write about parts of the everyday that are far more depressing---the fact she is 11 and not toilet-trained, the fact she screams and cries part of most every day, the fact she bites her arm so much it has a permanent scar, the fact her communication skills are so poor she suffered with a burst appendix for three days without treatment, unable to tell us how she felt.  I want others to love Janey as I love her, and I am always conscious of not making her "look bad".  And I don't want to appear to be trying to make people feel sorry for me.  I'm very aware of that.  I want people never to feel I am looking for sympathy.  That's my own issue, but I think it affects other parents too.

Another reason the tougher side of autism isn't presented more in the media is because it's not a feel-good story.  I read something recently about those ads on TV trying to get you to sponsor a hungry child, and how they don't generally show starving children.  They show cute, somewhat thin children in piles of trash.  People tend to tune out if they are overly depressed by what is being presented.  It's a lot more appealing (and probably gets higher news ratings) to show the kid with autism winning a spelling bee, or going to the prom, or playing the piano perfectly by ear than to show a child biting themselves or others, or screaming for hours, or banging their heads.  People would be upset by that, and tune it out, most people anyway.

Also, I think people like stories with a villain.  I think that is a lot of why the whole unproven autism/vaccination story had far, far more than its 15 minutes of fame.  It's a villain story--the evil government and medical community poisoning our kids into autism.  The fact that in the vast majority of cases that is not what happened doesn't take away from it being a good story, one that celebrities latch onto.  I've heard that some groups go as far as saying there aren't any adults with autism, because that muddies the story---if autism wasn't caused by too many vaccines, how could those adults have gotten it?  A child with a severe disability that just seems to sort of happen isn't a story we can feel outrage over.

The reality of children like Janey is something that people are not prepared for.  I've had the experience a few times that I am sure a lot of you have had, when Janey is met by someone who hasn't before met close up a child with autism, the experience of watching their expectations crumble.  They expect to be charmed by her quirky and interesting take on life, to form some kind of pure and beautiful connection with an otherworldly, unique child.  When they are faced with the real life Janey, most likely screaming and biting herself, maybe wet from a soaked pull-up, not answering questions or showing any interest in them, or perhaps showing too much interest, wanting them to play a clapping game for an hour on end---they get the stunned look.  I have become very familiar with that look, the look of someone realizing for the first time what autism really looks like.

It would be fine for most of the world to continue to have their sanitized view of autism, if that didn't mean that they weren't preparing for a future with a lot of Janeys in it.  Whenever people vote down money for group homes or moan about how much is spent on special education or continue to support organizations that give almost no money for actual direct care of the Janeys out there (yes, Autism Speaks, I'm talking about you), they are building a world that is going to be in for a huge surprise when someday, the Janeys are no longer able to be cared for at home.  People like Janey exist.  They are out there.  They matter.  I am going to try hard to be one of the voices that DOES talk about the other autism.  It's what I can do, from this little corner, tell my own story and hopefully, be a voice for Janey---my  beloved daughter with the kind of autism that isn't talked about.

The long recovery, the school visit, and loneliness at the edge of the spectrum

Janey is gradually, gradually getting better.  She spends less of her day in bed now, and walks much less hunched over.  She is starting to eat a little bit better, and we don't worry all day quite as much about her drinking enough.  But it's SLOW.  I'm very glad the surgeon warned us it would be, or we would be much more worried.

Yesterday, we went to visit Janey's classroom, to say goodbye to her teacher and pick up her stuff.  It was the last full day of the school year, although of course Janey's school year ended abruptly a month ago.  Janey was very happy to see everyone!  It took her a minute to take in that we were actually in her room, but once she did, she was all smiles.  It was wonderful to see.  Wonderful both ways---to see Janey happy, and to see her teacher and all the therapists and staff and aides that saw her so engaged with her, so happy to see her.  They all seemed to have a special thing they did with her, some kind of high five or dance or saying.  It was truly special to see.  We will miss Janey's teacher, Miss Jenn.  She was terrific with Janey, and so caring.  It was not an easy year for Janey, and she was with us every step of the way.

One thing that was interesting was how little attention Janey paid to the other kids.  They were happy to see her, and many of them ran over to hug her.  They had made her cards, which were great (and which made me see how Janey seems like the only kid in her class that can't draw or write)  She seemed to barely notice them.  I wonder if this is because many of them seem to operate at a lot higher level than her, or if it's just how Janey is.

Later yesterday, we visited with a woman and her daughter who we'd met because Freddy is friends with a son his age in the family.  The daughter is on the spectrum, although on the far other end from Janey.  Janey again paid not much attention to the girl.

Some day, I'd like to do a tour and meet in person many of the people I've met through this blog, to talk with them (wouldn't that be wonderful!) and to meet their daughters.  I feel like I've never met another family in person with a daughter like Janey.  It's a bit of a lonely feeling, that yesterday pounded home to me.  The autistic spectrum is very wide, and the edges of it are not as populated, especially's Janey's end, I am finding.

Another feeling hit me yesterday, a bit more positive one.  I realized how when I'm not around other kids, Janey just seems like Janey.  I don't spend a lot of time comparing her to where she "should" be.  It doesn't seem especially strange to me that she doesn't talk much, or that she screams a lot, or that she isn't toilet trained, that she can't read or write or draw.  Of course, I wish she could do those things, but that's not Janey.  Unless I'm face to face with others that can do those things, even though they have the same diagnosis as Janey, it just seems like---well, Janey is Janey.  I guess that's autism acceptance, in a way.  It doesn't mean that I don't feel sad that Janey's life is and will be very limited by what she can't do, but I don't spend a lot of time thinking how different she is from others.

The part that does make me angry is how there is so much less help for kids like Janey than there is for kids with less severe autism.  There is nothing for Janey except school, nothing.  No camps, no respite, no social skills groups, no friends, no lessons, nothing.  There is nothing.  That has been confirmed by talking with three social workers specializing in kids like Janey in the last month.  And it's why I am so grateful for her school.  I felt at home there yesterday---not quite as at home as I used to at her old school, but at home.  I felt like it was a place where Janey was accepted and loved. And there aren't that many places like that.  So thank you, Boston Public Schools.  You don't get enough love, but for our family, you've been wonderful.

Hopeful visit to an autism clinic

Today we had our visit to the Lurie Center, an autism center connected to Massachusetts General Hospital.  We had been waiting a long time for this appointment.  A lot of people had recommended this center to us back when Janey had her crisis in November, and I contacted them then.  To get the appointment, I had to fill out a lot of form, wait for them to be processed, and then I got a call to set a time, which was far in the future---but the future finally arrived!

Cheery Janey before the appointment

I was trying not to get my hopes up much for this appointment.  We've had several other such clinic visits at different places, and they have been mostly letdowns.  I didn't want to pin a lot of hopes on this one, but I must say I'm feeling good about it, and quite hopeful in a lot of ways.

The appointment mostly consisted of me talking to a psychiatrist specialist in autism.  Tony came along, and Janey was in and out of the room, as her patience for sitting around during long talks is limited.  I knew as soon as I started talking to the psychiatrist that she seemed to truly understand and ask the right questions about Janey.  In analyzing what was different in my head, I realized that it seemed like she had a lot of experience dealing with children like Janey---children on the lower end of the autistic spectrum, the children that wind up in hospitals and in psychiatric wards.  That was strangely comforting.  Often, even in the world of autism, I feel like an outsider.  I don't need peppy "resources" about camps Janey never could attend or ideas for games or books she could never read or play.  I need practical advice and help, and I felt like I got it there.

First, we got a prescription for a new medication.  This one will eventually replace the Risperidone that Janey has been taking for a long time.  The psychiatrist was very, very familiar with the various medications for kids like Janey.  We were pleased to hear her say that the psychiatrist Janey has seen up to this point has done quite a decent job with her medication so far.  However, he is a more mainstream guy, who I believe sees mostly kids with things like school anxiety.  Today's psychiatrist knows more about kids with severe mood swing, aggressive behaviors and self-injury, and we are hopeful about the new medication.  We did have a scare when our pharmacy said our co-pay would be $150 a month (for 30 pills!)  But we reminded them she has the supplemental state insurance, and for the first time, that worked well for us, and we didn't have to pay at all.  Out of pocket, the cost would have been $1124!  We joked that we certainly hope they are miracle pills.

Next, we talked about how we can get more help for Janey, and what we will do if she has another crisis.  The psychiatrist finally convinced me to consider in-home help.  I have been resistant to it, for many reasons---it is not respite, but rather someone working with Janey AND us, I am not terribly into having strangers come into my house, I don't feel like it would be helpful for our family, and a bit of "I don't need someone telling me how handle Janey".  But at this point, we are ready for any help we can get, and what most convinced me is that she told us it's the first step to getting almost any other kinds of respite style help.  So...okay.  We'll talk to someone about it.

If Janey has another crisis, we will take her to Mass General.  The psychiatrist said everyone in the ER there is trained to deal with autism, and she herself has connections to Bradley Hospital, where Janey went before.  She said it's possible that if Janey truly needs help quickly, she might even be able to get her directly admitted to Bradley.  I think that is what most made me feel a burden had been lifted from me.  I think I've been living in fear of Janey having another hospitalization, and of feeling completely alone in that, like it would be the end of the world.  The way this woman talked so matter-of-factly about it melted a frozen place in me.  She said it like it would be something we could deal with, something that is not shocking or horrible or unspeakable.  She said it like she expects it to happen at some point.  It's strange that would feel so freeing to me.  But I think I've been trying for a long, long time to fit Janey into a mold that doesn't fit her.  She is NOT mildly affected by her autism. Today I somehow felt for one of the first times that she is not one of a kind, that there are actually protocols in place for kids like her.  I'm not sure I'm explaining this as well as I can, but having a plan for what might happen makes it not feel like the world's worth thing.

Janey and William at Noodles and Company, eating out!

We will take Janey to her first follow-up appointment at the center in a few months, and in December we will see a geneticist, something I have long wanted to do.

The rest of the day was very nice.  We did a lunch out at an upscale fast food place, along with William, and Janey was quite good.  Then she went for a long ride with Tony and William to a guitar store.  She was cheerful almost all day.  And I am feeling better than I have in a while, feeling like there is a place, there are people, there are systems set up for kids like Janey.  I've always know there were others like her, thanks to all of you, but this is one of the first times I've truly felt there are others outside the world of us hardcore insiders who really get what we live, and that is a good feeling.

When inclusive isn't inclusive---the cheery camp booklet

Last week, I went to a presentation at Janey's school, about summer programs, given by people from an autism program at a local hospital.  I hesitated to write this post, because I don't want to put down the people who gave the presentation.  They were earnest, well-meaning and caring.  However, I left feeling like, frankly, their whole presentation had been a waste of my time.

The people from the hospital had made up a very colorful and cheery summer guide.  They made sure we noticed the cute clip art, the little asides and pictures and all.  The core of the guide was a list of 12 camps.  Almost all of these camps were called "inclusive".  A few, instead, were listed as being (and I quote directly from one of them) "for individuals with high functioning disabilities".  One of them said it was for "children with special needs", but then right under that, said "1:3 counselor to child ratio"

As the presenters went through the camps, I felt increasingly depressed.  None of the camps would be a possibility for Janey.  She isn't able to be "included" in the way meant by the camps.  The peppy social stories and advice on talking to counselors would not make her able to attend the camps.  A one to three ratio would never, ever, ever work.

I debated mentally whether to say anything to the presenters about my thoughts.  I know that children in the autism program at Janey's school have a spectrum of abilities.  I am sure many of them COULD go to these camps, and so I decided to keep my mouth shut, to let them get the benefit of the presentation.  Thankfully, one of the autism program directors from the school spoke up and asked the question I had been so much wanting to.  She explained that some of the children in their program had very high needs, and asked if any of the camps on the list would be able to handle that.

The presenters were a little flustered, I think.  They said no, the camps probably wouldn't to able to handle that.  The woman from the school asked if they knew of a camp that could.  They mentioned a camp that "might be able to".  I then spoke up and asked about why that camp wasn't on the list.  They looked at each other uncertainly and said they weren't sure why---that maybe the camp wasn't really for autistic kids.

I am not trying to be mean to these hospital employees.  I don't blame them.  I don't blame anyone, really.  But the guide they gave, and their initial "There's so much out there!" vibe are part of a huge problem.  There is a giant divide between what one of the camps called "high functioning disabilities" and Janey's type of disability.  The general public doesn't, for the most part, understand this.  They might look at a booklet like the camp one and think "Wow!  I almost wish MY child had special needs!  Why do these people whine so much?"

Fortunately, Janey DOES have a summer program.  She goes to summer school right at the same place she goes to winter school---at the public school she attends.  Kids with a very high risk of slipping backwards during the summer get summer school, by law.  The law doesn't say how MUCH summer school they get, though.  This summer, the school will be only 4 days a week, for 5 weeks.  20 days.  The summer has a lot more days than that.  Just a few years ago, the program was 30 days, but I guess our kids, our very high need kids, are not a budget priority.  I wonder if someone up there in the decision-making office thinks "Well, there's plenty else out there for them to do in the summer!" while looking at the same cheery little booklet I am.

I want to end this with a huge, giant, heart-felt thank you to the teachers, aides, program directors, ABA therapists and more that work at Janey's school (and those who worked at her old school and worked for so many years to practice true inclusion).  They don't get the glory, but they are the ones that truly do accept everyone.  Inclusion, in my new thinking of the word, means being able to say "Yes!  We welcome your child!  We will meet their needs!" And it matters to me really not at all if this is in a classroom or camp with no "typical" kids at all.  I'd rather have her accepted than not included in "inclusion"

Keeping on blogging, even when it's hard to do

Over the seven years I've had this blog, I've almost never NOT felt like writing for it.  Even on the worst days, writing was something that helped.  This past week, though, is the very first time I've had less than full enthusiasm for writing here.  

I've noticed, in reading other autism blogs, that most of them deal with kids making a lot of progress.  I don't think this always means that every kid with autism DOES make a lot of progress.  I think it means that when the progress stalls, the writing does too.  It's easier to feel excited about writing when there is something new and exciting your child is doing to talk about.  I think this is also one of the reasons that there are less blogs out there featuring kids with low functioning autism (and yes, I do hate the term, but for now, it's the term that will let people understand what I mean).  Another reason of course is that LFA doesn't leave a lot of time or energy for blogging, but it's more.  I think people want to write encouraging and upbeat things.  They want to help others.  They want to give hope to those with newly diagnosed kids.  When that gets hard to do, it's harder to find a way to write that feels useful.

The past year with Janey has been a very discouraging one, overall.  After starting her 3rd grade year with enthusiasm and excitement, after looking forward to her being part of a brand new K-12 pathway at the school I loved, after having high hopes when she showed signs of being able to read---things felt like they came crashing down.  Janey's behavior escalated, and I gradually had to accept that the school she was in was no longer the right place for her.  Sometimes I feel like it's only now it's really hit me.  Although I know I'm being a little dramatic in saying it, it's hit me that she couldn't be included in a school called a total inclusion school.  That was and is tough.  

Janey's behavior has changed in quite a few ways over the past year.  It was about a year ago she first started biting her own arm, a behavior that now shows itself almost every day.  She also started lashing out by pulling people's hair, scratching them and occasionally biting them.  This doesn't happen all the time, but it happens enough to put people around her on edge.  The screaming escalated to a new level.  When Janey screams now, it's absolutely incredibly loud and horrible to hear, because she sounds like she's in extreme pain.

If I'm totally honest with myself, I also have to say Janey talks less than she did a year ago.  Sometimes I make myself go back and read old blog entries, where I often quote things she has said, and she is not currently talking as well as she did at almost any point in her past.  Her speech at this point is either requests or quotes---almost never anything else.  The requests are only in regards to food, videos, sleep or hygiene (wanting a shower or her hair brushed, things like that).  The quotes generally have nothing to do with anything actually going on.

Janey's sleep is also often very disrupted.  It comes and goes, but there are often two or three weeks in a row where she wakes up every night at 2 or 3 am and doesn't go back to sleep.

I have to admit it---I'm depressed and discouraged lately.  It's hard for me to be encouraging in my writing.  It's hard for me to look at the bright side of things.  

However, I'm going to keep writing.  I feel like I have to, for myself, for Janey and for the other children out there with low-functioning autism.  Unlike those with higher functioning autism, children like Janey are not going to write their own blogs (and I know there are rare exceptions, but those are children who HAVE found a way to communicate, which means they CAN speak for themselves, and it is great they can).  I want to be the voice Janey can't be.  I want to be honest about her life, and our life.  I owe that to her.  I want to be a voice for the kids like her---the ones that don't make for conventionally uplifting writing.  I want to do that because despite that, she is a person of value, a person with just as much importance and just the same rights as any other child.  If I don't write the truth about life with her, I am hiding who she really is, and who she is is not something that needs to be hidden.  I love my daughter more than words can ever say, but I'm going to try to keep using words to give her a voice.

Guilt and Bus Aides

This year, it seems Janey has a one-on-one aide on the school bus, both ways.  This isn't something we requested, or something in her IEP, or that we were told was going to happen, but we don't have a problem with it.  The aide in the morning gets on the bus when Janey does, and the aide in the afternoon gets off when Janey gets off.  There's another aide on each bus, for the rest of the kids.

I am not sure why Janey got a bus aide.  I don't think she's had real problems on the bus, not that we've ever been told about.  I'm sure she has screamed on the bus at least a few times, and bitten herself, because it would be pretty surprising if she never had, but usually she seems pretty calm on there.  My guess is that once she even once showed that she could potentially be very distracting to the driver, they insisted on aides.  And that is fine.

When Janey gets off the bus, it's usually about two in the afternoon.  Tony gets home about five.  Those aren't easy hours.  I've been trying to figure out ways to make them better, and I've over and over thought about trying to find a class or program during that time.  However, something always stops me.  I woke in the night last night thinking about it, and I realized I just plain don't feel able to take Janey anyplace in the car by myself any more.  I do take her for short rides, once in a while, but the thought of driving any distance with her, just the two of us, scares me very much.

Janey is rapidly getting bigger.  She's going through a growth spurt.  Along with that, she seems to be far more prone lately to sudden rages.  They come out of no-where.  Things can seem fine, calm, and then suddenly, Janey lashes out.  She lunges at whoever is nearby, she smashes things with her fist, she bites herself, she pulls our hair, she screams her incredibly loud scream.  If this happened while I was driving, it could be a catastrophe.  If you've ever driven the streets of Boston, you know that it's crazy out there.  I am not a confident driver.  I need to concentrate while I drive.  I hadn't realized it consciously, but the fear of driving alone with Janey is the reason I haven't been able to move forward with afternoon programs.

When I woke in the night last night and realized this, my default emotion was guilt.  That's no surprise.  That's my default emotion for any situation.  But then I thought about the bus aides.  Professional drivers, with already one adult on a bus, decided it wasn't safe to drive with Janey unless a second adult was assigned to her.  I had a moment I rarely have when I thought about that---a moment of realizing I shouldn't feel guilty.

I read a statistic lately in an article about autism and aggression.  It was one of those articles which highlighted very high functioning people with autism, and emphasized how rare it is for autistic people to be aggressive.  That's an important notion to get out there, I agree.  The article had a statistic I hadn't heard before---that only 7% of autistic people are low-functioning with aggressive behaviors.  I wish I didn't have to admit to myself that Janey seems to be falling into that 7 percent.  I hope against hope she someone gets over the lashing out.  But for now, I have to live in the reality of the present.  And I have to keep her safe, and myself safe.  Until I can be sure that I can, I need to accept that I'm not going to be driving her around on my own very much.  And I am glad the Boston Public Schools transportation department helped me see that.

Specialer Needs within Special Needs

One thing I really like about Janey being in an autism-only classroom is that lots of information gets sent home about opportunities for kids with special needs.  In an integrated classroom, it would set the special needs kids apart to just give them such information, but in a classroom where everyone has special needs, everyone can be given the flyers.  I love looking them over.  They do sometimes, however, point out to me that "special needs" covers some pretty wide ground.

I got a flyer recently about a camp run by the Boston Centers for Youth and Family---the community centers of Boston.  It was about a winter version of a summer camp they hold, called Camp Joy.  It meets on Saturdays, near us, and it sounded great---things like swimming, games, field trips, etc.  It was very reasonably priced, and I was starting to think about doing the paperwork when I read more closely, and saw that one of the requirements was that "campers must be able to interact in a 4:1 participant to staff ratio".  Well, that took care of that.  There is no way on earth that would work for Janey.  She could, if she was in a very good mood, maybe be okay with a 2:1 ratio, but she often needs 1:1, and during her tougher moments, more like 1:2, with two adults for just her.  

This reminded me of the respite house we tried last summer.  It was also for children with special needs, but we decided to stop sending Janey when it was obvious that the ratios of caregivers to children was not at any kind of level safe for Janey.  It was a beautiful place, run by very well-meaning workers, constructed I imagine at great cost by donations, but it left out kids like Janey.

  

I am not sure of my feelings about special needs programs that can't handle the "specialer" special needs.  I like to keep rooted in reality.  I know that every program doesn't have the staffing or means to serve all children.  I know that if they put their funds into being able to serve Janey, that might leave several other children with less demanding special needs without a program.  I don't expect special treatment.  But sometimes it's very frustrating that Janey's needs leave so very few of the opportunities for even children with special needs open to her.  

What would be a solution?  One I thought of was recruiting college students as volunteers.  There are many colleges in the Boston area, and many students preparing for a career in special needs teaching.  Maybe they could get class credit for providing one-on-one help so that high needs children could attend something like the Camp Joy winter camp.  I'm not expecting them to help Janey go to even a regular camp, or something like a regular dance class.  I would love help just so she could go to a special needs camp.  I am sure there are a lot of other mothers and fathers like us, that would love that help.

One of the problems is just with the term "special needs".  It's pretty general.  I have been trying lately to avoid terms like "low-functioning autism".  I can understand that it labels Janey and kids like her, that every child has areas where they are low or high functioning.  But if you just say "special needs", you aren't saying a lot.  And the general public might think, and in fact I've often heard it said "There's ALL KINDS of programs out there for kids with special needs!"  Well, that is even debatable, but there are some, but except for the public schools, most of them can't serve a child like Janey, a child that needs absolutely constant supervision and is prone to sudden accelerations in difficult behaviors, a child that is not toilet trained and can only speak in a limited way.  What do we call kids like her?  SPECIAL special needs?  And how few people out there are aware of the challenges of raising a child is not even able to attend a camp or program labeled for being for children with disabilities or special needs?

I'll end with a thank you to the public schools.  I say it a lot, because I think it a lot.  I am so thankful that the public schools serve everyone.  I send Janey off to school just like any other parent.  She might not learn the same things, but she gets on the bus and goes to school.  I know that wasn't always the case, even in fairly recent history, and I am so glad that I am living at a time when it is.